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Topic: Melatonin in the UK (Read 614 times) |
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Emily
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Melatonin in the UK
« on: Nov 4th, 2007, 4:49pm » |
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So, all of a sudden last Monday - BANG! My first night time hit - at about 12.45 and meant I and my poor OH were up until about 2.30am. This has continued all week. It's just the one, but it's a big one - 8 or 9 lasting between 1.5 - 2 hours.
After a few days, I thought about trying melatonin (after hearing so much about it), but when I went to the health food shop, the woman told me I couldn't buy it because it was banned. She then tried to sell me some special stuff to make me tan better... 
Can anyone shed any light on this for me?
Thanks,
Em
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aloneuk
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Re: Melatonin in the UK
« Reply #2 on: Nov 4th, 2007, 4:59pm » |
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Sorry your getting hit at night too  
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the devil changes you !
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Emily
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Re: Melatonin in the UK
« Reply #3 on: Nov 5th, 2007, 1:49pm » |
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Thanks for that Ike.
I was a bit worried as to why I couldn't buy it over the counter, but it just seems that British medical people haven't tested it enough to know what the long term effects are - like most of the things we try to help with CH on a daily basis!!
Night time hits are crap. Hating them and have found a way I can hold the icepack to my head with a head torch strap to help it while I try and snooze!
Going to order some from Ebay and give it a shot I think. What's the worst that can happen?!?
Em
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cluster
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Melatonin in the US
« Reply #5 on: Nov 6th, 2007, 5:05am » |
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Just to add:
Quote:
... The author believes that melatonin should be initiated in all cluster patients as a first-line preventive sometimes even before verapamil. It has minimal side effects and in a number of patients it can turn off nocturnal clusters within 24 hours. Melatonin also appears to prevent daytime attacks. In addition, even when melatonin does not completely resolve all of the attacks it appears to lower the dose necessary of the other addon preventives. The typical dose of melatonin used is 9mg at bedtime (three 3mg tablets) but higher dosages may be necessary. If one brand of commercial melatonin does not work another should be tried because the true amount of melatonin in various OTC brands varies widely.
Source: Todd D Rozen: Cluster Headache – Diagnosis and Treatment
http://www.touchbriefings.com/pdf/1239/ACF293.pdf
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Emily
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Re: Melatonin in the UK
« Reply #6 on: Nov 6th, 2007, 9:17am » |
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That's super info Cluster.
My doc was less than pleased about mel (see rant in CH Specific!), but think I'm going to give it a go anyway.
Em
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Yorky
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Re: Melatonin in the UK
« Reply #7 on: Nov 12th, 2007, 11:47am » |
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hi emily
just ask your doctor for it (i did)
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LeLimey
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Re: Melatonin in the UK
« Reply #8 on: Nov 12th, 2007, 11:54am » |
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Melatonin is available in the UK but only on prescription. This is purely because Bloody Brussels can't keep their snouts out of our prescriptions! They say the dosage isn't accurate enough on OTC meds (Tell it to the US huh?)
Anyway, Melatonin is available as I said but in the BNF it is listed as only being prescribable for children with sleep problems or ADHD. Some doctors will prescribe it for us, others won't. The long and the short of it is they don't HAVE to.
I order it over the internet from www.vitacost.com whom I can highly recommend for good prices and excellent service.
I hope this helps!!
Helen
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SteveY
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Re: Melatonin in the UK
« Reply #9 on: Nov 12th, 2007, 4:18pm » |
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Does it help Helen?
If so, in what way, less attacks, less pain?
Ta
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LeLimey
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Re: Melatonin in the UK
« Reply #10 on: Nov 12th, 2007, 4:46pm » |
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Its not for me Steve - its for Jasper He is prescribed it by Queens Square (I don't give meds to my kids without a doctors say so) The only trouble is they prescribe big assed capsules he can't swallow and the poweder doesn't dissolve in Squash or anything - so I get it in a sub lingual form from Vitacost.
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Emily
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Re: Melatonin in the UK
« Reply #11 on: Nov 13th, 2007, 7:03am » |
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Hello,
I feel very naughty, but I ordered some from Ebay and it arrived Sat. 
Because of the grogginess warnings I had, I have started only on 3mg (I'm really sensitive to that kind of stuff - Night Nurse kicks in and makes me dribble in 10 mins!!). It has been sending my to sleep within 30 mins and I'm not waking up in the middle of the night - hooray!
I was still getting a few hits during the days until today. Normally by now I'd have had 3 or 4, but today I've just got shadows which I can cope with no problem!
My next question (I'm a pain in the arse, I know!)... Should I up to 6mg or shall I leave it at 3? The reason I'm asking is because if it is just shadows and it helps, I'm not going to start this pred taper just yet. I've cashed in my scrip, however I think I may save it until the beast comes a-stomping for real. It also saves me another trip to the doc. I know this is technically med advice, but I trust you folks WAY more than the medical profession at the minute.
Em
PS - Am heading to Canada on 28 Dec, so am happy to take some orders for anyone here who would like me to bring some back.
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LeLimey
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Re: Melatonin in the UK
« Reply #12 on: Nov 13th, 2007, 7:20am » |
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I'd say give it another day or so to see if it stops the shadows at 3mg too - it seems to be having a good cumulative effect so far.
You won't come to any harm by upping it to 6mg but I'm all for sticking to the lowest dose possible. (Jasper was started on 6mg as an FYI)
If you're keeping the pred til needed/if needed you might want to keep it in the fridge but hopefully you'll never need it anyway.. fingers crossed!!
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ski2k
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Re: Melatonin in the UK
« Reply #13 on: Nov 13th, 2007, 7:40am » |
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Great news, Emily!!
I'm with Helen on this one. If 3mg seems to be helping, then stick with it for a while and see if it will kick the shadows out too after it's been in your system for a while. If, after a week or so, it doesn't seem to be getting any better, then try upping the dose.
Take care, and continued PF time to ya!!
Adam
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Emily
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Re: Melatonin in the UK
« Reply #14 on: Nov 13th, 2007, 8:18am » |
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Thanks folks. I figured I would give 3mg a week to kick in or so. I guess 3 days to knock the hits isn't bad!
I'll be keeping my fingers crossed that it blows the shadows away. I can't remember the last time I had a day without shadows. A month - maybe 5 weeks.
I'll keep you updated!
Em
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cart7
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Re: Melatonin in the UK
« Reply #15 on: Nov 17th, 2007, 11:14pm » |
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From the stuff I've read on Melatonin, I was the perfect candidate. I ran to Walmart and picked some up. So far, 2 nights and nothing. No shadows, no attacks, nothing. Praying that this keeps up.
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E-Double
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Re: Melatonin in the UK
« Reply #16 on: Nov 18th, 2007, 6:05am » |
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Sleep is good 
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| « Last Edit: Nov 18th, 2007, 6:06am by E-Double » |
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Emily
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Re: Melatonin in the UK
« Reply #17 on: Nov 27th, 2007, 6:48am » |
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Just a quick update for you!
I upped to 6mgs and all was well, but then disaster struck! I went away on Friday night and forgot my tablets. I went straight to work yesterday morning from the in-laws and by 4pm I had a hit. Last night (and all night) I was hit repeatedly. 
Hence why I'm now sat here in my pjs feeling sorry for myself. Guess it's going to take a few days to get back in my system now isn't it?
Feeling-v-sorry-for-myself-but-deserve-no-sympathy,
Em
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George_J
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Re: Melatonin in the UK
« Reply #18 on: Nov 27th, 2007, 9:49am » |
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As sensitive to it as you were, Emily, and as quickly as it worked for you last time, I'll be surprised if it takes much time to get back into your system.
Very happy to hear that melatonin seems to be working for you.
Best wishes,
George
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